Madeline and her family have been supported by the charity Genetic Disorders UK, which is dedicated to improving the quality of life for people and families affected by genetic disorders.
Click above to watch ITV News Anglia's Jonathan Wills interviewing Laura Pattison from the charity.
More top news
Anglia Late Edition looks at how airport expansion will affect the East of England along with the issue of new grammar schools.
There'll be some dense patches of mist and fog about first thing this morning but it will clear later. Then, a cloudy but mostly dry day.
It will be a bright start in places but the cloud will thicken from the north during the afternoon and there'll be a few spots of rain.